The IBD Registry can provide a comprehensive infrastructure for research partners through its Web Tool, which is currently being used in over 60 sites. The Web Tool is a relatively low-cost and flexible system. It can be updated with research specific data fields directing clinicians to capture the information required.
Data captured as part of a research partnership will inform service standards, clinical guidelines, quality improvement and assurance programmes. The Registry Web Tool is currently facilitating two research projects:
Anaemia Service Evaluation (ASE): This project is a joint working initiative with Pharmacosmos, and aims to evaluate the level of service IBD patients receive and how they are treated. The study will gather data on 100 patients with IBD. Iron levels will then be monitored over 12 months to determine how well iron deficiency anaemia is managed in this cohort of patients.
The UK Vedolizumab Real Life Experience Study in Inflammatory Bowel Disease (VEST) aims to gather outcomes data on vedolizumab in a real-world clinical setting. Hospitals across the UK are currently participating and the study is open to new sites. Eligible patients have to be adults who are due to start vedolizumab in standard care. Data is obtained from the patient’s own reported outcomes, clinical assessments and the medical notes including disease characterisation, medications, previous history and blood test results.
Dr Keith Bodger describes how the IBD Registry can be used for Research
Find out more about:
The IBD Registry is starting on its next phase of growth, and we have 2 positions to fill to help us grow. We currently work with about 70 UK hospitals, the NHS, Universities, healthtech companies, a number of pharmaceutical companies and our group of specialist...read more
We will be closed over the key Xmas and New Year dates (Mon 24th, Tues 25th and Wed 26th December; then Monday 31st December and Tuesday 1st January 2019). For those catching up on data capture in the Xmas quiet period, we are running an essential support service on...read more
Continuing its mission to improve the care that people with IBD receive, the Royal College of Physicians is offering IBD teams an opportunity to participate in a new quality improvement collaborative, consisting of three 1-day learning sessions and supported action...read more
Following the establishment of IBD Registry Limited as an independent not-for-profit company, we have moved offices to: The IBD Registry The Ebbisham Centre 6-7 Derby Square EPSOM KT19 8AG Telephone (unchanged): 020 393 3969 Contact (unchanged):...read more
If you’re coming to the BSG Annual Meeting in Liverpool next week, do come and say hello to us – we’re at stand B58 in the exhibition.read more